14-year-old Marie Freyre of Tampa, FL had a beautiful life. She was happy in her home with her family and very well loved. She smiled constantly, loved music, and had a very devoted mother and extended family. There was one issue, though. She was ill. Very ill. Disabled and medically fragile, actually.

There is an ongoing dispute between Florida healthcare regulators and the U.S. Department of Justice. The state claims that parents of disabled and medically fragile children have “choice” over where their child receives care, but federal civil rights lawyers claim that Florida has “systematically” force-fed disabled children into nursing homes that are designed for adults, which violates the Americans with Disabilities Act (ADA). The ADA requires that people with disabilities be allowed to live and receive care outside of institutions.

Marie Freyre was born with fluid surrounding her brain. She suffered from severe seizures and cerebral palsy. She required seizure medication three times per day. Marie’s mother, Doris Freyre, worked before she herself became disabled, then she took on the full-time care of her daughter. Because of her mother’s diligent care and monitoring of medication, Marie did not have seizures for years. She sometimes suffered excruciating pain from a permanently displaced hip. She was unable to speak, but communicated well through expressions and vocalizations. But she was cherished, loved, and cared for by her family. There are very few photos of Marie not smiling, and though she could not speak, she didn’t have to. Her innate joy was evident in her facial expressions.

Clearly Doris was an excellent mother who made a difficult choice.

“When Doris was first informed that her only child could be born with significant disabilities, she did not decide to abort this child,” said the family’s Tampa lawyer, Peter Brudny. “Doris spent every day of 14 years of her life giving everything she had to Marie, guaranteeing that Marie lived as healthy and wonderful a life as God allowed her.”

In spite of this, in March 2011 state child protection investigators removed Marie from her mother’s home and placed her at Tampa General Hospital after an in-home nurse expressed concerns about Freyre’s parenting abilities to the State Department of Children & Families.

The chain of events that began then is every family’s worst nightmare: losing complete control over issues concerning their children.

Freyre and her father, Marie’s grandfather, immediately began to fight for Marie. Hillsborough Circuit Judge Vivian Corvo, the presiding judge over child welfare cases in Tampa, began a hearing on Marie’s case on March 30, 2011. She praised Freyre’s care for her daughter.

“You are to be congratulated for caring for your daughter alone for 14 years. This is something that has to have been very, very difficult for you. As a mother,” she added, “I was moved by how hard you’ve worked to take care of your daughter.”

Judge Corvo did not question the quality of the child’s care, but there was a concern because of Freyre’s disabilities. Freyre suffers from six herniated discs and carpal tunnel syndrome in her wrists. Doctors had encouraged Freyre to have surgery, but she refused.

“The doctor told me to do surgery,” Freyre said in court. “I told him no, because I have to take care of my daughter.”

Marie’s Tampa pediatrician wrote a prescription for the hours needed and Freyre asked the state Agency for Health Care Administration (AHCA) for 24/7 nursing care. There was a time gap was between midnight and 7:00 AM in which Doris Freyre had no in-home assistance. She herself needed to sleep, and she needed assistance with re-positioning Marie and changing her diapers. The AHCA refused to pay for additional hours. AHCA administrators wanted to move Marie to a nursing home. Freyre’s attorney stated that the move could kill her.

“With this type of child, when you institutionalize them,” attorney Steve Zucker said, “they never do well. And I’m very concerned.”

Judge Corvo questioned the AHCA decision.

“This is a non-verbal child, with all of these issues,” the judge said. “Why would this mother not qualify for 24-hour care?”

Judge Corvo wrote an order for the state to return Marie to her mother immediately and provide nursing care for the hours between midnight and 7:00 AM. AHCA completely ignored the order. 12 days after the hearing, a caseworker wrote “is not recommending the child return home.”

Two days later, the state Attorney General’s Office appeared before Judge Emily Peacock. AHCA again refused to pay for additional hours. They determined that a nursing home was the only option.

“The best placement for the child right now is a … nursing home where she can get that 24-hour supervision and care that she needs,” said Angeline Attila, an assistant attorney general.

Judge Peacock didn’t even question why the state had ignored Judge Corvo’s order, and ordered the institutionalization of Marie Freyre.

Florida healthcare administrators prefer to institutionalize children, even though in-home care is demonstrably less costly than institutional care. Florida’s Medicaid program insures needy and disabled people. The program will pay up to $506 a day to for nursing home care for disabled children, but refuses to cover in-home care. The nursing home industry has claimed that extremely disabled children receive better care in a nursing home setting than they receive with parental or other in-home care.

Not true.

A detailed analysis of state records filed by Miami civil rights lawyer, Matthew Dietz, shows that for disabled and medically fragile children aged three and older, the death rate is 41.2 percent in nursing homes, and is less than 10 percent for children who are cared for by family and in-home care givers.

“There is no question at all that children do better in their homes,” said Dr. Daniel Armstrong, associate chairman of pediatrics at the University of Miami and director of the Mailman Center for Child Development. “There is mounting and overwhelming evidence that children fare better in supported homes and in community settings, rather than institutions.”

At 11:30 AM on April 25 2011, Tampa General Hospital put Marie on a stretcher and sent her to the Florida Club Care Center in Miami Gardens. A report that detailed Tampa General’s care of Marie shows that the hospital did not ensure that the child was properly hydrated before being put into the ambulance. She was given no water or food during the trip, and arrived screaming at the nursing home.

Records for the next 12 hours show four notations in Marie’s file, with two of the notations documenting that Marie was still screaming. At 5:40 AM on April 27, the notes state that Marie was having “labored breathing.” At 5:45, she was unresponsive.

The AHCA investigation concluded that the nursing home had not administered her life-sustaining anti-seizure drugs, required three times per day.

On December 8th 2012, the Miami Herald reported that The Department of Children & Families (DCF) has distributed a updated policy that requires high-level approval before a child can be admitted to a nursing home. DCF will also increase efforts to recruit foster parents who are trained to care for children who are medically fragile. The move sends the powerful message that DCF no longer favors the institutionalization of children.

“A core mission of DCF is to ensure that children are raised in families,” wrote Assistant Secretary for Operations Pete Digre, whose signature will be required before a foster child can be institutionalized.

Moving forward, caseworkers will need the approval of Digre before moving a child into a nursing home.

In an interview with the Miami HeraldTuesday night, Digre said that his agency has visited and reviewed the cases of every foster child who is still living in a nursing home. The reviews will continue and caseworkers will be required to re-examine the care plans for every child monthly. The goal will be to find homes, via adoption or a return to the family, for every medically fragile child in state care.

Digre said the agency also intends to expand the use of medical foster homes, in which medically fragile children can live with families who are trained to use feeding and breathing tubes and meet other medical needs.

“There is general consensus that recent efforts for expanding foster parents for medical licensure have lagged, and this is an excellent opportunity to invigorate our recruitment in this area,” he wrote.

On May 9th, Doris Freyre appeared before a judge in Tampa one last time. Her purpose was to get her daughter’s body back from the Miami-Dade Medical Examiner so that she could seek a private autopsy. Judge Emily Parker, who had approved the state’s request to institutionalize Marie, told Freyre that she was “terribly sorry” for the Freyre family’s loss.

Freyre replied “I don’t accept your excuse.”

“I had her for 14 years – cared (for) and loved her,” Freyre said. “And you have her … in prison, in the hospital. … Then, in (12) hours, you took her down to Miami and she died,” Freyre added. “And I want the truth of this to come out. I want justice.”

However, Marie’s body remained in storage for nine full months before the Miami-Dade Medical Examiner completed its autopsy. Freyre held a memorial without her daughter’s body. At the end of this saga, Marie’s body was cremated in Tampa and her ashes were sent to Puerto Rico for a private funeral.

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